Guest guest Posted September 30, 2011 Report Share Posted September 30, 2011 Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2011 Report Share Posted September 30, 2011 Honestly when my son needs to be on steroids he does better for a while, I guess the anti-inflammatory agent really helps him. When he was yonger he recated to steroids in a really negative way, but recently if he needs it he responds positively and doesn't get secondary infection either. Tunde Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... -- " Our lives begin to end the day we become silent about things that matter. " MLK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 Do you know why its been prescribed? My understanding is, it helps over-inflamed body to calm down. I don't think it will be a long term medical intervention. Usually the practice is, get inflammation under control and then change the drug so that the stage of the body/inflammation remains as it is. In case if you don't know, you don't stop it abruptly but taper it off. It may make your body more prone to infaction but AFAIK, yeast more than anything. I have used prednisone for controlling my ulcerative colitis inflammation and the above theory was told to me by my GI. Its function in treating spectrum disorder is unknown to me. / Noel Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 Autism *is* inflammation. And yes, there are some docs that will prescribe prednisone long term.http://www.aheadwithautism.com/research.htmlIt's relatively new. Only in the last say 5 or 6 years has this been building up and gaining momentum. I believe most DANs still use it in short term but they are long term advocates are getting up there in number. My own DAN is an advocate. I haven't done it so I have no first hand experience and honestly, I don't know anyone personally that has. It does lower the immune system. So my suggestion (just from the standpoint of taking the immune system into consideration) would be to make sure other things that might be necessary are in place first - like any antivirals, antibiotics, antifungals, immune modulators, etc. So much of what we do needs to be done simultaneously with other things in order to gain maximum results. I would talk to your doc about getting these things done first and then bring that on board if you want to do it.~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Do you know why its been prescribed? My understanding is, it helps over-inflamed body to calm down. I don't think it will be a long term medical intervention. Usually the practice is, get inflammation under control and then change the drug so that the stage of the body/inflammation remains as it is. In case if you don't know, you don't stop it abruptly but taper it off. It may make your body more prone to infaction but AFAIK, yeast more than anything. I have used prednisone for controlling my ulcerative colitis inflammation and the above theory was told to me by my GI. Its function in treating spectrum disorder is unknown to me. / Noel Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 We use Prednisone 3 days a month to offset side effects of IVIG. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of georgiasand32Sent: Friday, September 30, 2011 12:03 PMTo: mb12valtrex Subject: Prednisone Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 What side effects are you seeing?Sent from my iPhone We use Prednisone 3 days a month to offset side effects of IVIG. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of georgiasand32Sent: Friday, September 30, 2011 12:03 PMTo: mb12valtrex Subject: Prednisone Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 Our son is Nonverbal so he can't tell us what exactly he is feeling. It appears to be a Headache which is the number one side effect associated with IVIG. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of SetlakSent: Saturday, October 01, 2011 11:35 AMTo: mb12valtrex Subject: Re: Prednisone What side effects are you seeing?Sent from my iPhone We use Prednisone 3 days a month to offset side effects of IVIG. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of georgiasand32Sent: Friday, September 30, 2011 12:03 PMTo: mb12valtrex Subject: Prednisone Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 Ok. Thx for sharing. Glad the prednisone is helping. RuthSent from my iPhone Our son is Nonverbal so he can't tell us what exactly he is feeling. It appears to be a Headache which is the number one side effect associated with IVIG. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of SetlakSent: Saturday, October 01, 2011 11:35 AMTo: mb12valtrex Subject: Re: Prednisone What side effects are you seeing?Sent from my iPhone We use Prednisone 3 days a month to offset side effects of IVIG. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of georgiasand32Sent: Friday, September 30, 2011 12:03 PMTo: mb12valtrex Subject: Prednisone Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 That's really interesting. I thought IVIG help with inflammation so I'm surprised you would need an anti-inflammatory to go along with it. May I ask how long your child has been doing IVIG? On a monthly basis? At the maximum dose? > > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG. > > > > > > > > Pamela > > > > > > > > From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of georgiasand32 > > Sent: Friday, September 30, 2011 12:03 PM > > To: mb12valtrex > > Subject: Prednisone > > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 He's going to try prednisone as he has not responded to anything else so the doctor is hoping to get some type of a reaction from this as we have not tried steroids before as I do not like the idea of them. Seems like a bandage to cover up the underlying, root cause of the matter. However, since we seem to have exhausted all other options will try this in the hopes of giving the over-inflammed body a chance to heal? Although I remain skeptical. > > > ** > > > > > > Is this a long-term medical intervention? Has anyone successfully used > > this? What concerns me most about this is it is a steroid that tells the > > immune system to cool down, while letting infections probably get stronger? > > Or does it just help an over-inflammed body temporarily calm down enough to > > come back and fight those infections? Worried about making a sick child even > > sicker, but if it could give his little body a break and a chance to > > heal.... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 Cheryl--I have read that article in the past, it is very interesting. But I am left wondering how sick those children, who are wonderful examples of success, actually were? I would be curious to see how a PANDAS or lyme or herpes child does on this.....also how long does a child who is truly inflammed have to remain on steroids for? It seems that Secretin was an important component to the success which is also something I am interested in learning about. > > > > Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 How sick are any of our children? It's all relative. This same exact question of how sick can be asked of absolutely every protocol. It's too big a question and truthfully, it's not a fair question. It's question we can ask of kids just starting GFCF. (My very sick kid got absolutely nothing from it - or any other diet).My son was very sick. But he has little to no gut problems - something typically associated with "sick". )That doesn't mean he doesn't have parasites or anything) it just means he poops fine, food doesn't bother him, his tummy isn't distended and he does all right. But his immune system sucks. He spent the first 3 years of his life sick with upper respiratory problems. He has hormone problems out the wazoo. No real stims, decent eye contact, could pretty much pass for typical until he talks. He was very sick. But you wouldn't know it. I just tried to drop him down to 2x a day on antivirals with *disastrous* effects. My once mostly recovered boy now is only "almost" there. He slid back and it'll be another month or two until he's back to normal. Which means while he may be recovered, he is very reliant upon biomed still. I'll take recovery any way I can get it. But I definitely would prefer not to need biomed anymore.And many kids have the same issues he has and don't know it. How many kids have been doing biomed for 5 years and *never* done antivirals? My point is, you just never know how sick anyone is. My son darn near recovered from antivirals and antifungals alone. Saw results the day after we started. That doesn't mean others respond the same way. So the question of how sick isn't really much of a question. We're all sick. The question is where to focus our efforts. There is not one study in which all factors have been taken into consideration. Not one ever. A study on Valtrex is not going to go through finding what vitamin/mineral deficiencies there are, heavy metals, PANDAS, Lyme, hormones, food allergies, gut problems, etc. These things just aren't going to be documented. Studies *have* to be focused. We can't answer this kind of large scale question you want to see answers too until we have support from our government. The cost of these kinds of answers go well beyond anything anyone can do right now.How sick is not the question. What does *your* child need is the question. ~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Cheryl--I have read that article in the past, it is very interesting. But I am left wondering how sick those children, who are wonderful examples of success, actually were? I would be curious to see how a PANDAS or lyme or herpes child does on this.....also how long does a child who is truly inflammed have to remain on steroids for? It seems that Secretin was an important component to the success which is also something I am interested in learning about. > > > > Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 We've been doing IVIG for years due to my son's Hypogammaglobulinemia. Once a month. We've done400 mg/kg, but he is currently on 800mg/kg. IVIG can cause flu-like symptoms for up to a week after the infusion. The most common side effect is a headache. Hydration during the IV and afterwards can help with that. IVIG causes temporary brain inflammation in an NT individual. It is likely that our children have brain inflammation at baseline. Thus the need for a few days of steroids immediately following the infusion. Steroids are often given in the IV. Our son get steroids there as well to offset side effects. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of georgiasand32Sent: Saturday, October 01, 2011 3:44 PMTo: mb12valtrex Subject: Re: Prednisone That's really interesting. I thought IVIG help with inflammation so I'm surprised you would need an anti-inflammatory to go along with it. May I ask how long your child has been doing IVIG? On a monthly basis? At the maximum dose?> > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG.> > > > > > > > Pamela> > > > > > > > From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of georgiasand32> > Sent: Friday, September 30, 2011 12:03 PM> > To: mb12valtrex > > Subject: Prednisone> > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal....> > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Pamela--That's really interesting and new to me about IVIG causing brain inflammation. My son has also been getting it for years and, I thought, a large reason he has been getting it is to reduce his chronic brain inflammation that was found on the AC test. The idea that IVIG could be contributing to this inflammation is a new one for me and concerning. Does the Prednisone cross the BBB to help with his brain inflammation? > > > > > > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG. > > > > > > > > > > > > Pamela > > > > > > > > > > > > From: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > [mailto:mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> ] > On Behalf Of georgiasand32 > > > Sent: Friday, September 30, 2011 12:03 PM > > > To: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > > Subject: Prednisone > > > > > > > > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used > this? What concerns me most about this is it is a steroid that tells the > immune system to cool down, while letting infections probably get stronger? > Or does it just help an over-inflammed body temporarily calm down enough to > come back and fight those infections? Worried about making a sick child even > sicker, but if it could give his little body a break and a chance to > heal.... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Sounds like you may be a patient at ICDRC? I got my info from Dr. R. I do not know without research if Prednisone crosses the BBB. Again, not all patients will require steroids to offset the side effects. We have seen more side effects with the larger dose compared to the smaller dose. At the same time, we have seen more gains on the larger dose versus the smaller dose. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of georgiasand32Sent: Monday, October 03, 2011 2:20 PMTo: mb12valtrex Subject: Re: Prednisone Pamela--That's really interesting and new to me about IVIG causing brain inflammation. My son has also been getting it for years and, I thought, a large reason he has been getting it is to reduce his chronic brain inflammation that was found on the AC test. The idea that IVIG could be contributing to this inflammation is a new one for me and concerning. Does the Prednisone cross the BBB to help with his brain inflammation?> > > > > > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG.> > > > > > > > > > > > Pamela> > > > > > > > > > > > From: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com>> [mailto:mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> ]> On Behalf Of georgiasand32> > > Sent: Friday, September 30, 2011 12:03 PM> > > To: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > > Subject: Prednisone> > > > > > > > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used> this? What concerns me most about this is it is a steroid that tells the> immune system to cool down, while letting infections probably get stronger?> Or does it just help an over-inflammed body temporarily calm down enough to> come back and fight those infections? Worried about making a sick child even> sicker, but if it could give his little body a break and a chance to> heal....> > > > > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Cheryl I think you are brilliant. - ChrissyTo: mb12valtrex Sent: Saturday, October 1, 2011 4:23 PMSubject: Re: Re: Prednisone How sick are any of our children? It's all relative. This same exact question of how sick can be asked of absolutely every protocol. It's too big a question and truthfully, it's not a fair question. It's question we can ask of kids just starting GFCF. (My very sick kid got absolutely nothing from it - or any other diet).My son was very sick. But he has little to no gut problems - something typically associated with "sick". )That doesn't mean he doesn't have parasites or anything) it just means he poops fine, food doesn't bother him, his tummy isn't distended and he does all right. But his immune system sucks. He spent the first 3 years of his life sick with upper respiratory problems. He has hormone problems out the wazoo. No real stims, decent eye contact, could pretty much pass for typical until he talks. He was very sick. But you wouldn't know it. I just tried to drop him down to 2x a day on antivirals with *disastrous* effects. My once mostly recovered boy now is only "almost" there. He slid back and it'll be another month or two until he's back to normal. Which means while he may be recovered, he is very reliant upon biomed still. I'll take recovery any way I can get it. But I definitely would prefer not to need biomed anymore.And many kids have the same issues he has and don't know it. How many kids have been doing biomed for 5 years and *never* done antivirals? My point is, you just never know how sick anyone is. My son darn near recovered from antivirals and antifungals alone. Saw results the day after we started. That doesn't mean others respond the same way. So the question of how sick isn't really much of a question. We're all sick. The question is where to focus our efforts. There is not one study in which all factors have been taken into consideration. Not one ever. A study on Valtrex is not going to go through finding what vitamin/mineral deficiencies there are, heavy metals, PANDAS, Lyme, hormones, food allergies, gut problems, etc. These things just aren't going to be documented. Studies *have* to be focused. We can't answer this kind of large scale question you want to see answers too until we have support from our government. The cost of these kinds of answers go well beyond anything anyone can do right now.How sick is not the question. What does *your* child need is the question. ~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Cheryl--I have read that article in the past, it is very interesting. But I am left wondering how sick those children, who are wonderful examples of success, actually were? I would be curious to see how a PANDAS or lyme or herpes child does on this.....also how long does a child who is truly inflammed have to remain on steroids for? It seems that Secretin was an important component to the success which is also something I am interested in learning about. > > > > Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Cheryl, I appreciate your long response and it makes sense. I am not new to this field, I was hoping that someone on this group, with first hand experience, both with Prednisone and PANDAS, herpes or lyme would be able to share their personal experiences from using Prednisone and how or if it effected their child's viral or bacterial infections as steroids concern me since they repress an already depleted immune system. > > > > > > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG. > > > > > > > > > > > > Pamela > > > > > > > > > > > > From: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > [mailto:mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> ] > On Behalf Of georgiasand32 > > > Sent: Friday, September 30, 2011 12:03 PM > > > To: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > > Subject: Prednisone > > > > > > > > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used > this? What concerns me most about this is it is a steroid that tells the > immune system to cool down, while letting infections probably get stronger? > Or does it just help an over-inflammed body temporarily calm down enough to > come back and fight those infections? Worried about making a sick child even > sicker, but if it could give his little body a break and a chance to > heal.... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Lol! I don't know that most people would use the word brilliant to describe. It does begin with a B though... o_O ~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Cheryl I think you are brilliant. - ChrissyTo: mb12valtrex Sent: Saturday, October 1, 2011 4:23 PMSubject: Re: Re: Prednisone How sick are any of our children? It's all relative. This same exact question of how sick can be asked of absolutely every protocol. It's too big a question and truthfully, it's not a fair question. It's question we can ask of kids just starting GFCF. (My very sick kid got absolutely nothing from it - or any other diet).My son was very sick. But he has little to no gut problems - something typically associated with "sick". )That doesn't mean he doesn't have parasites or anything) it just means he poops fine, food doesn't bother him, his tummy isn't distended and he does all right. But his immune system sucks. He spent the first 3 years of his life sick with upper respiratory problems. He has hormone problems out the wazoo. No real stims, decent eye contact, could pretty much pass for typical until he talks. He was very sick. But you wouldn't know it. I just tried to drop him down to 2x a day on antivirals with *disastrous* effects. My once mostly recovered boy now is only "almost" there. He slid back and it'll be another month or two until he's back to normal. Which means while he may be recovered, he is very reliant upon biomed still. I'll take recovery any way I can get it. But I definitely would prefer not to need biomed anymore.And many kids have the same issues he has and don't know it. How many kids have been doing biomed for 5 years and *never* done antivirals? My point is, you just never know how sick anyone is. My son darn near recovered from antivirals and antifungals alone. Saw results the day after we started. That doesn't mean others respond the same way. So the question of how sick isn't really much of a question. We're all sick. The question is where to focus our efforts. There is not one study in which all factors have been taken into consideration. Not one ever. A study on Valtrex is not going to go through finding what vitamin/mineral deficiencies there are, heavy metals, PANDAS, Lyme, hormones, food allergies, gut problems, etc. These things just aren't going to be documented. Studies *have* to be focused. We can't answer this kind of large scale question you want to see answers too until we have support from our government. The cost of these kinds of answers go well beyond anything anyone can do right now.How sick is not the question. What does *your* child need is the question. <skullsignatureb & wsepiahandcoloredsmall.png>~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Cheryl--I have read that article in the past, it is very interesting. But I am left wondering how sick those children, who are wonderful examples of success, actually were? I would be curious to see how a PANDAS or lyme or herpes child does on this.....also how long does a child who is truly inflammed have to remain on steroids for? It seems that Secretin was an important component to the success which is also something I am interested in learning about. > > > > Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Lol! I don't know that most people would use the word brilliant to describe. It does begin with a B though... o_O ~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Cheryl I think you are brilliant. - ChrissyTo: mb12valtrex Sent: Saturday, October 1, 2011 4:23 PMSubject: Re: Re: Prednisone How sick are any of our children? It's all relative. This same exact question of how sick can be asked of absolutely every protocol. It's too big a question and truthfully, it's not a fair question. It's question we can ask of kids just starting GFCF. (My very sick kid got absolutely nothing from it - or any other diet).My son was very sick. But he has little to no gut problems - something typically associated with "sick". )That doesn't mean he doesn't have parasites or anything) it just means he poops fine, food doesn't bother him, his tummy isn't distended and he does all right. But his immune system sucks. He spent the first 3 years of his life sick with upper respiratory problems. He has hormone problems out the wazoo. No real stims, decent eye contact, could pretty much pass for typical until he talks. He was very sick. But you wouldn't know it. I just tried to drop him down to 2x a day on antivirals with *disastrous* effects. My once mostly recovered boy now is only "almost" there. He slid back and it'll be another month or two until he's back to normal. Which means while he may be recovered, he is very reliant upon biomed still. I'll take recovery any way I can get it. But I definitely would prefer not to need biomed anymore.And many kids have the same issues he has and don't know it. How many kids have been doing biomed for 5 years and *never* done antivirals? My point is, you just never know how sick anyone is. My son darn near recovered from antivirals and antifungals alone. Saw results the day after we started. That doesn't mean others respond the same way. So the question of how sick isn't really much of a question. We're all sick. The question is where to focus our efforts. There is not one study in which all factors have been taken into consideration. Not one ever. A study on Valtrex is not going to go through finding what vitamin/mineral deficiencies there are, heavy metals, PANDAS, Lyme, hormones, food allergies, gut problems, etc. These things just aren't going to be documented. Studies *have* to be focused. We can't answer this kind of large scale question you want to see answers too until we have support from our government. The cost of these kinds of answers go well beyond anything anyone can do right now.How sick is not the question. What does *your* child need is the question. <skullsignatureb & wsepiahandcoloredsmall.png>~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Cheryl--I have read that article in the past, it is very interesting. But I am left wondering how sick those children, who are wonderful examples of success, actually were? I would be curious to see how a PANDAS or lyme or herpes child does on this.....also how long does a child who is truly inflammed have to remain on steroids for? It seems that Secretin was an important component to the success which is also something I am interested in learning about. > > > > Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal.... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Sorry, I didn't meant to go on a long rant. I was under the impression you were asking about how sick the kids in the study were and that's an impossible question. But if you're looking for first hand experience, I have to give up the floor. No prednisone in my house. *But* we do use hydrocortisone. Would that be helpful? They are both corticosteroids and produced through adrenals... ~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Cheryl, I appreciate your long response and it makes sense. I am not new to this field, I was hoping that someone on this group, with first hand experience, both with Prednisone and PANDAS, herpes or lyme would be able to share their personal experiences from using Prednisone and how or if it effected their child's viral or bacterial infections as steroids concern me since they repress an already depleted immune system. > > > > > > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG. > > > > > > > > > > > > Pamela > > > > > > > > > > > > From: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > [mailto:mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> ] > On Behalf Of georgiasand32 > > > Sent: Friday, September 30, 2011 12:03 PM > > > To: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > > Subject: Prednisone > > > > > > > > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used > this? What concerns me most about this is it is a steroid that tells the > immune system to cool down, while letting infections probably get stronger? > Or does it just help an over-inflammed body temporarily calm down enough to > come back and fight those infections? Worried about making a sick child even > sicker, but if it could give his little body a break and a chance to > heal.... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Re: IVIG Are you seeing any improvements? We did 6 months but really didn't see anything. Thanks! To: mb12valtrex Sent: Monday, October 3, 2011 7:04 PMSubject: Re: Prednisone Cheryl, I appreciate your long response and it makes sense. I am not new to this field, I was hoping that someone on this group, with first hand experience, both with Prednisone and PANDAS, herpes or lyme would be able to share their personal experiences from using Prednisone and how or if it effected their child's viral or bacterial infections as steroids concern me since they repress an already depleted immune system. > > > > > > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG. > > > > > > > > > > > > Pamela > > > > > > > > > > > > From: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > [mailto:mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> ] > On Behalf Of georgiasand32 > > > Sent: Friday, September 30, 2011 12:03 PM > > > To: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > > Subject: Prednisone > > > > > > > > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used > this? What concerns me most about this is it is a steroid that tells the > immune system to cool down, while letting infections probably get stronger? > Or does it just help an over-inflammed body temporarily calm down enough to > come back and fight those infections? Worried about making a sick child even > sicker, but if it could give his little body a break and a chance to > heal.... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 LOL To: mb12valtrex Sent: Monday, October 3, 2011 9:04 PMSubject: Re: Prednisone Lol! I don't know that most people would use the word brilliant to describe. It does begin with a B though... o_O ~Antiviral Therapy 101 ~ gryffinstail.wordpress.com/ ~ ~ @Gryffins_Tail ~ Cheryl I think you are brilliant. - Chrissy To: mb12valtrex Sent: Saturday, October 1, 2011 4:23 PMSubject: Re: Re: Prednisone How sick are any of our children? It's all relative. This same exact question of how sick can be asked of absolutely every protocol. It's too big a question and truthfully, it's not a fair question. It's question we can ask of kids just starting GFCF. (My very sick kid got absolutely nothing from it - or any other diet). My son was very sick. But he has little to no gut problems - something typically associated with "sick". )That doesn't mean he doesn't have parasites or anything) it just means he poops fine, food doesn't bother him, his tummy isn't distended and he does all right. But his immune system sucks. He spent the first 3 years of his life sick with upper respiratory problems. He has hormone problems out the wazoo. No real stims, decent eye contact, could pretty much pass for typical until he talks. He was very sick. But you wouldn't know it. I just tried to drop him down to 2x a day on antivirals with *disastrous* effects. My once mostly recovered boy now is only "almost" there. He slid back and it'll be another month or two until he's back to normal. Which means while he may be recovered, he is very reliant upon biomed still. I'll take recovery any way I can get it. But I definitely would prefer not to need biomed anymore. And many kids have the same issues he has and don't know it. How many kids have been doing biomed for 5 years and *never* done antivirals? My point is, you just never know how sick anyone is. My son darn near recovered from antivirals and antifungals alone. Saw results the day after we started. That doesn't mean others respond the same way. So the question of how sick isn't really much of a question. We're all sick. The question is where to focus our efforts. There is not one study in which all factors have been taken into consideration. Not one ever. A study on Valtrex is not going to go through finding what vitamin/mineral deficiencies there are, heavy metals, PANDAS, Lyme, hormones, food allergies, gut problems, etc. These things just aren't going to be documented. Studies *have* to be focused. We can't answer this kind of large scale question you want to see answers too until we have support from our government. The cost of these kinds of answers go well beyond anything anyone can do right now. How sick is not the question. What does *your* child need is the question. <skullsignatureb & wsepiahandcoloredsmall.png>~Antiviral Therapy 101 ~ gryffinstail.wordpress.com/ ~ ~ @Gryffins_Tail ~ Cheryl--I have read that article in the past, it is very interesting. But I am left wondering how sick those children, who are wonderful examples of success, actually were? I would be curious to see how a PANDAS or lyme or herpes child does on this.....also how long does a child who is truly inflammed have to remain on steroids for? It seems that Secretin was an important component to the success which is also something I am interested in learning about.> > > > Is this a long-term medical intervention? Has anyone successfully used this? What concerns me most about this is it is a steroid that tells the immune system to cool down, while letting infections probably get stronger? Or does it just help an over-inflammed body temporarily calm down enough to come back and fight those infections? Worried about making a sick child even sicker, but if it could give his little body a break and a chance to heal....> > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2011 Report Share Posted October 4, 2011 Cheryl--Yes, any experience you have with the steroids would be interesting to me--no need to apologize, I really appreciate all of your intelligent feedback. I am thinking of asking for cortisone shots next, I fear the Prednisone may have been a mistake in my child's case. As for IVIG--yes, we have seen positives from it but have been doing it at high levels for years now but evetually, for us at least, the gains did plateau and now it may be time to stop. > > > > > > > > > > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG. > > > > > > > > > > > > > > > > Pamela > > > > > > > > > > > > > > > > From: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > [mailto:mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> ] > > On Behalf Of georgiasand32 > > > > Sent: Friday, September 30, 2011 12:03 PM > > > > To: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > > > Subject: Prednisone > > > > > > > > > > > > > > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used > > this? What concerns me most about this is it is a steroid that tells the > > immune system to cool down, while letting infections probably get stronger? > > Or does it just help an over-inflammed body temporarily calm down enough to > > come back and fight those infections? Worried about making a sick child even > > sicker, but if it could give his little body a break and a chance to > > heal.... > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2011 Report Share Posted October 4, 2011 We use 5mg of hydrocortisone in the morning, then again in the afternoon. We do this for adrenal fatigue and we also do it because my son is on GH and GH will burn out adrenals. That and he also has thyroid issues. Essentially, if you have one hormone problem, you likely have a slew of them. Behaviorally, I can't say I see any difference. This, for us, has been one of those interventions that produce a biological result, not behavioral. He needs hydrocortisone so he gets hydrocortisone kind of thing.I do *think* there are behavioral benefits but not significant which is why I can't say I see any difference. I'm not positive where or when they show up because in my experience, I've found that each hormone affects the other. So if I haven't run out of thyroid and he's out of hydrocortisone, I may not see a difference, but if he's out of both thyroid and hydrocortisone, he might be a bit grumpier, a little less energetic but these are all not *super* significant that I notice or pay attention to (because it's quantifiable even in traditional medicine - labs are pretty reliable in this arena). He probably feels the difference. It's also possible that he can't connect how he feels to the meds yet, he's still only 7 and most 7 years can't do that. Heck, most adults can't do that.But what I can tell you: not a single negative has come out of it. He's been on it for maybe 3 years now. We initially started because he has dark circles (that have never gone away no matter what I did and I now hear might be parasites - one of the things I've just always "put off"! Lol!) and also because he has low cortisol levels and thyroid problems. Then we found out he had low GH and started GH and he also has low testosterone, progestorone, and pregnenelone. And low D (which is actually a hormone). He has low everything when it comes to hormones.And guess what, I have the exact same problems. We had a very difficult pregnancy and 2 months prior to getting pregnant with him, I had a miscarriage. So our problems started then. When you look at our labs, they are pretty much exactly the same. A jacked up hormonal mess. ~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~ Cheryl--Yes, any experience you have with the steroids would be interesting to me--no need to apologize, I really appreciate all of your intelligent feedback. I am thinking of asking for cortisone shots next, I fear the Prednisone may have been a mistake in my child's case. As for IVIG--yes, we have seen positives from it but have been doing it at high levels for years now but evetually, for us at least, the gains did plateau and now it may be time to stop. > > > > > > > > > > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG. > > > > > > > > > > > > > > > > Pamela > > > > > > > > > > > > > > > > From: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > [mailto:mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> ] > > On Behalf Of georgiasand32 > > > > Sent: Friday, September 30, 2011 12:03 PM > > > > To: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > > > Subject: Prednisone > > > > > > > > > > > > > > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used > > this? What concerns me most about this is it is a steroid that tells the > > immune system to cool down, while letting infections probably get stronger? > > Or does it just help an over-inflammed body temporarily calm down enough to > > come back and fight those infections? Worried about making a sick child even > > sicker, but if it could give his little body a break and a chance to > > heal.... > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2011 Report Share Posted October 4, 2011 I took hydrocortisone as part of an adrenal protocol and it kicked up lung worms. I discontinued and focused on my parasite protocl and both symptoms improved. Caryn > > > > > > > > > > > > > > > > > > > > We use Prednisone 3 days a month to offset side effects of IVIG. > > > > > > > > > > > > > > > > > > > > Pamela > > > > > > > > > > > > > > > > > > > > From: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > > [mailto:mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> ] > > > On Behalf Of georgiasand32 > > > > > Sent: Friday, September 30, 2011 12:03 PM > > > > > To: mb12valtrex <mailto:mb12valtrex%40yahoogroups.com> > > > > > Subject: Prednisone > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Is this a long-term medical intervention? Has anyone successfully used > > > this? What concerns me most about this is it is a steroid that tells the > > > immune system to cool down, while letting infections probably get stronger? > > > Or does it just help an over-inflammed body temporarily calm down enough to > > > come back and fight those infections? Worried about making a sick child even > > > sicker, but if it could give his little body a break and a chance to > > > heal.... > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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